Keeping Track of My Father's Exit. By Alan G. Ampolsk

The Story So Far

I'm a writer, photographer, consultant. Age 51. My father was a reporter and editor. Then he became something other than that. He died February 8, 2010 at 87. He was widowed in 2003. His decline started a little earlier. His sister died of Alzheimer's.

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The Naming of Cats and Other Alzheimer's Evidence

I'm still not nearly as active here as I'd like but I've been busy behind the scenes - sifting and filing and discarding material, both figuratively and literally. Re: the latter - it's roughly a year since I got started on the last big physical challenge, which was the act of getting him admitted to the nursing home and moved from New York to Maryland. I expected a whole series of challenges to follow, and some did, but thanks to his death at the beginning of February, some didn't. For example, there won't need to be an application for Maryland Medicaid in 2012. That means that reams of support documents and financial paperwork can go into storage. I could probably discard them, but since his finances aren't completely closed yet, you never know - I might need to pull some form or other to help settle his nursing home pharmacy bill, which is still open on the books. But having them in storage is better than having them underfoot. I can see my office floor again. That wasn't the case even a couple of weeks ago.

Since we're noting anniversaries, I'll mention in passing that this coming Saturday, September 11, would have been his 88th birthday. I'm not feeling anything at all about that except a sense of relief. His birthdays were becoming a form of torture, and given the trajectory he was on, I don't know what we would have done to observe this year's. Probably nothing - to ignore it would have been the kindest thing for everybody concerned. Better to have it all done with.

As I sort papers I'm finding or rediscovering other items - the magazines he edited, his courtship letters, the press release he wrote about the Coast Guard's participation in the Roosevelt funeral, a series of bank statement that show the progressive loss of his ability to work with numbers and spell and write his signature (or even write anything resembling a signature). At some point sooner rather than later, I'll buy a flatbed scanner and post some of it here to share with you.

One of the rediscoveries isn't a physical object, rather a memory that helps me answer the question I've been working over in the past couple of entries - when did he first show symptoms? The answer was right under my nose - in fact, I've even blogged about it a couple of times before, but for some reason couldn't remember it when I needed it. It has to do with the names of the family cats, which locate his symptoms more accurately than my dreams did. I've heard that the naming of cats is a difficult matter. It was in this case.

My parents adopted the first of their final set of cats in July 2000. I've told you about him - he was (is) a somewhat odd white cat with ginger markings called Scooter. The oddness has to do with the fact that he's not really comfortable in his cat skin - I always got the sense that something had gotten screwed up with his current incarnation, he wasn't supposed to have been a cat, and he's spending all his time figuring out how to work this cat thing he's found himself in, sort of like Vincent D'Onofrio in Men in Black.

I remember vividly the first time I saw him. For some reason or other, probably work-related, I hadn't been able to visit my parents for a couple of weeks, and they decided to entertain themselves by "forgetting" to mention to me that a cat had arrived (they hadn't had pets in years). I finally showed up on a Saturday afternoon, opened the door and saw this animal crouching in the foyer. Complete moment of cognitive dissonance while I tried to work with the available information and then I asked them what seemed at the moment to be the most sensible question I could come up with: "Uh... are you guys aware there's a cat on the floor out here?"

People generally assume that Scooter was named for Phil Rizzuto, but he wasn't. He was named for the Razor Scooter that had just been introduced, and had touched off a major fad. My mother had gotten obsessed with the Razor Scooter - absolutely had to have one. My father was resistant. My mother's cancer treatments at the time involved steroids and hormone therapies. She'd gained a significant amount of weight and her balance wasn't very good. In the past couple of years she'd fallen twice - once she came away with a gash over her eye and the the other time she broke her wrist. So he wasn't eager to have her tooling around the Upper West Side on her Razor. My mother, being who she was, was actively unhappy about it - I'm sure she understood the reasoning but the scooter meant freedom (and there was probably some sort of obscure childhood connection) and her condition meant a kind of imprisonment. She was angry and depressed. The cat was a consolation prize - therefore, "Scooter." I'm not sure who named him - I think they collaborated on it.

You can see how complex and allusive and psychologically acute the naming process was. This sort of complexity and irony was a family tradition - when I was growing up, one of the pets was a parakeet called Fricassee. Scooter fit right in with that.

The second cat arrived sometime between the winter and the summer of 2001 - closer to summer, I think. He was another shelter cat - a white longhair who might have had some Persian in him. My mother named him Snowbell or Snowball or something along those lines.

My father couldn't figure out the name - couldn't remember it, couldn't hold onto it, and it seemed that at some level, it just didn't make sense to him. In 2000, Scooter became Scooter, but in mid-2001, Snowbell had to be renamed, and became Whitey, which my father could manage.

The third cat joined them in December 2001. She was a small, shy tabby (she's since become an alpha who dominates my friend Adam's household, which also includes poor Scooter - who, by the way, dominated Whitey and drove him into a new home in mid-2002). Because of her size, and the need for another simple name, my mother called her "Baby." That didn't work - my father couldn't work consistently with the two syllables. So Baby became Babe.

Those are the data points that give us the first appearance of the Alzheimer's symptoms - as early as January 2001, certainly by July 2001, and worsening by December 2001. By the time I talked to my mother about him, and had my dream about him, the speech/naming problems had been in evidence for 6-12 months. That makes sense - it'd take that long for a low-order problem to get under your skin to the point where you'd start dreaming about it.

The symptoms were, of course, very low order - there were the name- and noun problems but nothing that pointed to memory or reasoning. As to other possible issues - the cat timeline confirms that the speech issues were already in evidence at the time of the enormous fight over Uncle F. But I don't have evidence to connect the two. The Uncle F fightmight just have been another in a series of family events, and didn't necessarily point to disinhibition or failed reasoning or increased rigidity or other forms of cognitive damage.

Still, every history needs a starting point and now we have one here - symptomatic Alzheimer's in evidence in mid-2001.

For the record, that's more than two years before my father showed anything that I recognized as cognitive impairment, more than four years before I used the word "dementia," and more than five years before I started to think seriously about whether he might have Alzheimer's. Maybe this shows that I'm slow to catch on. But I think it also indicates how difficult it can be to recognize early signs of Alzheimer's, especially when your life and the patient's life are rolling along and you're mainly concerned with other things and Alzheimer's hasn't yet become the sole focus of your life.

The fact that his Alzheimer's didn't present as memory loss is another issue. I've said before and I'll talk again later on about how large a problem it is that Alzheimer's folklore and propaganda is fixated on memory, when in fact many other symptoms are possible. My father had no real memory problems until very late in the process, and that kept me from recognizing what was going on because, like a lot of other people, I'd bought into the storyline that says that Alzheimer's equals forgetting. Not necessarily.

This history has veered off course a little, as histories (or notes for histories) tend to do. Next time, I'll pick up where I'd meant to - at the time of my mother's last illness, when my father's reasoning started to fray. Unless, of course, the papers turn up something else worth noting, in which case we'll go there, instead.

Difficult, this memory business, but in the end it'll get us where we need to go.

Comments

That made me snort with laughter. I'm not much of a snorter, usually ;-D

How true, that a) it's not until later that you can see exactly where it started and b) it's not always forgetfulness that is the first symptom.

My MIL always had emotional problems, she was kind of a hysterical personality. Getting overly angry, having tantrums and more or less lacking in empathy. The main incident that I now think was our original wake-up call (which of course we didn't see as such but attributed to her being 'difficult') was the wake of a good friend of hers. She'd known her for years, and DH had roomed at the woman's house in the winter, as his school was an hour by bus and sometimes the roads were slick and the buses delayed. They were that close, but at the wake MIL acted like it was a class reunion, waving to friends across the room, 'Hey I haven't seen you in ages!', and not a tear shed. I was used to self-centered behavior from her but this took the cake. At the end of a Japanese wake held in a funeral parlor the family sees off those who came, they stand at the door and bow to those leaving. The place the family lines up is a clearly designated platform maybe 5 inches in height (it's all very ceremonial). MIL wanted to talk to the daughter but evidently didn't want to wait in line. She got up on the platform and started to dart up behind the lined-up family to make a bee-line for the daughter. Alarmed, I grabbed the back of her dress at the waist and held her back, and talked her into getting down. I was mortified.

After that, nothing unusual for a while and the incident slipped to the back of my memory. It was a few years after that we finally got a diagnosis after about a year of her refusing to see anyone about her memory problems. It was only last week that I suddenly remembered that wake, and the fact that it was about a year and half before FIL passed from AD. It means we're 9 years or so into the disease, and not the 5-6 we'd been thinking. Kind of surprising.

Hey, Alan. I've been so selfishly focused on my own panicked struggle I had not thought to visit here (or anywhere else!) for a long time. However, this has let me read the last several postings made subsequent to my last check in with you as one rich narrative which I greatly enjoyed -- not the struggles they depict, but the amazing and compelling depth and thoughtfulness of your writing and sharing. Thank you for that.

I am still entangled with the grief of my Momma's passing and the preceding years of the terrifying decline and horror of Alzheimer's. I wonder when I will get enough scar tissue built up around those wounds to stop having the trigger of sharp 'heart pain' that takes me directly to the powerless rage and frustration that I could not prevent the undignified dismantling of her Self. God, I actually suddenly started crying in (unsuccessful -- wonder why? Ha) job interviews when I thought of her. I'm viewable now as 'older' so the sight of me with tears in my eyes fighting for a facade of mature equanimity was not appealing to prospective employers. My identity for 59 years as my parents' daughter and my life as a small planet orbiting around their magnificent sun has left me wobbling in a solar system no longer kept happily in balance by their reassuring gravitational pull.

Ugh! Sorry about that excessive melodramatic depicting! But we are our parents' children, and as you have so movingly observed, the tales and chapters of their lives work a tremendous hold on the slanting of our own.

Thank you for continuing to write. As always, you mean a lot to me in my journey.